Patient groups, academics, health care professionals and all other interested parties having conducted research or studies on rare diseases or public health projects are encouraged to submit a poster abstract to the ECRD 2016.
The themes mentioned below suggest issues and topics the Poster Committee would like to have addressed and should serve as a valuable guide as you develop your poster abstract.
You are invited to submit poster abstracts that fall within the following themes:
Theme 1: Game Changers in Research: breakthroughs in science; examples of patient engagement in research; examples of health services research; examples of public-private initiatives to address the gaps in research and create opportunities.
Theme 2: Game Changers in Diagnosis: Examples of innovative models/projects/outcomes of studies on how to improve diagnosis for patients through data generation, sequencing, etc. to be used in clinical practice and therapy development; initiatives on how to improve healthcare pathways; advances / breakthroughs in diagnostic possibilities for undiagnosed patients; initiatives on how best to organise diagnostic services at national and European level; reports on experiences and best practices of harmonizing/standardizing research & clinical practice; stories about what a difference a diagnosis makes to families even if it doesn’t alter the medical management of the condition
Theme 3: Game Changers in Drug Development, Authorisation and Access: Early access initiatives; international collaboration fostering development of orphan medicinal products in Europe; patient organisation involvement in the development of orphan medicinal products in Europe; initiatives/access programmes aiming to fast-track development for rare & life threatening diseases; multi-stakeholder approaches to creating adaptive and collaborative development; “non-traditional” development teams; innovative clinical study designs; practical examples of how Member States are working together for pricing and reimbursement negotiations
Theme 4: Game Changers in Care Provision: Reports on experiences and best practices of Centres of Expertise, existing national and European networks; examples of how national networks have developed, from seed to success; examples of how networking has significantly improved care for patients; concepts for applications for ERN; reports on experiences or results of studies on what kind of clinical outcomes and data are relevant to measure benefit for patients; outcomes of national and European rare disease specific patient registries; good clinical practice guidelines; reports on experiences of eHealth platforms; new mHealth (mobile) tools to interest patients; reports on experiences and best practices for e-prescriptions; experiences on how to connect networks to local (national or regional) healthcare systems; examples of building case manager teams; reports on experiences of educating healthcare professionals and patients learning from each other
Theme 5: Game Changers in Social Policy: social research and surveys on social or economic challenges of people with a rare disease; studies on the cost-benefit and socio-economic impact of integrated care provision for complex health conditions; experiences of case management teams for chronic, rare or non-rare diseases; innovative solutions and programmes that address the social and other non-medical needs of rare disease patients; models for promoting independent living for people with a rare disease; studies on the impact of involving patients in the planning of social services; rare disease training programmes for social services providers
Theme 6: Game Changers in Global Society: examples of creative and successful ways of using social media to generate new knowledge, break isolation or gather patient reported outcomes, raise public awareness, attract younger audiences, and/or gather information for research (clinical trials), etc.; examples of how you are working towards building greater international synergy to make a difference at global, national and local levels
Theme 7: Rare Disease Patient Groups Innovations as Game Changers: innovative strategies/approaches/services or projects which could potentially be useful to other patient groups/healthcare professionals/academia or which deserve to be promoted internationally and recognised by national and European authorities.
Theme 8: Other/open topic: what would you like to say about your disease, your actions, and your vision?